CPAC form download

You can now access copies of the PDFs of the CPAC form that the Health and Disability Commissioner's office sent to me here: http://kaitake.blogspot.co.nz/p/resources.html

Visit to see an HDC advocate

During the term break, I called the customer service line for the local District Health Board to see if they could help. The nice guy there directed me back to the Health and Disability Advocacy service, which made sense. Although I'd already been there several months ago - and was advised that the HDC couldn't actually help in my case.

Well, I took the customer service rep's advice anyway, and emailed the HDC again for advice. The local advocate suggested I come in for a meeting with her. I wrote a "summary" (read: 9 pages) of our story, and off I went.

Well she was lovely. We spoke for over an hour and a half!

Turns out that I have 3 basic options:

1. Write letters to each of the health care providers who have given me/us bad service throughout this process.
2. Send my story to the Health and Disability Commissioner himself.
3. Do nothing.

By default, "doing nothing" is what we're already doing - just waiting out our time.

Because it won't take me much more work to write a cover letter and send my story off to the Commissioner, I think I will do that. I honestly don't expect it to have any impact on our case. It will probably take up to 8 weeks for a response to come back, and then he will have to make a decision on what direction our case should take. The Commissioner probably can't reduce our "penalty time" and even if he could, by the time the paper work is waded through, we will most likely be only our 18 month time of the waiting list anyway.

I'm fine with waiting lists, but not with illogical pseudo waiting lists. They suck.

The other option is to write letters to each of the providers concerned, telling them that their service is the pits and to pull up their socks. Again, I couldn't expect more than an apology letter from each of them, and at this stage I don't care for a bunch of useless apology letters.

I want to look forwards, not backwards. And that is a massively different way of looking at our situation, for me anyway.

Right now you're thinking "so what's the point of writing off to the Commissioner then?" Well, he has the power to review systemic problems and suggest changes. And that's what I really want. Well, that's what I want next to having our waiting time wiped. If the discrimination could be removed from the system then that would be incredibly positive. At this stage, that's all I can hope for, as there is nowhere else to turn to. I have literally tried all my options after this letter.

The good news is, once we finish waiting out 4.5 years (penalty time + waiting list) we will then be able to access fertility treatment.

It's just such a long way off.

Letters received, a decision made

This week a letter arrived back from the Member of Parliament (MP):

Monday, 21 March 2011


Dear [Kaitake] and [Hubby]


Thank you for the copy of correspondence between yourself and [One of the authors of the report: Access to Infertility Services: development of priority criteria: a consultation document. Simply referred to as "Author" from now on]. It was interesting to read and after the meeting in my office, it became clear that the single issue stopping funding at this point is when the three year time-frame officially commences for a couple who have one partner sterilised.


[The Author's] comments around the duration of infertility and balance of fairness they seek to manage are important considerations.


Following up from your recent visit and the information you have previously provided, I have written to the Minister of Health and received a reply last week from the Hon Tony Ryall, which I enclose to you.


The Minister's third paragraph mentions that a request for a second opinion on the review of your CPAC score can be made to the [local health board]. [The Author's] opinion is that the CPAC score was correct according to the criteria; however seeking a further review and if possible, a fresh assessment which takes into consideration [Kaitake's] diabetic condition, may be worthy of further consideration.


I know that IVF treatment is expensive. Failing public funding, consideration around personal funding is something you could consider if the waiting period is too harrowing for you. These are deeply personal and highly important issues and I wish you all the very best in approaching the [local health board] for a review.


If we can be of any further assistance please don't hesitate to contact my office.


Kind regards,
[MP]

and here is the letter from the Minister of Health that the was mentioned:

14 Mar 2011


Dear [MP],


Thank you for your email of 25 February 2011 on behalf of your constituent what has asked if her application for publicly funded IVF treatment can be reviewed.


Your constituent will have been assessed by a clinician using the clinical priority access criteria (CPAC) tool. CPAC is a decision-making tool to assess a candidate's suitability for publicly funded fertility treatment and takes into account a variety of factors such as the candidate's age and Follicule Stimulating Hormone level. Decision on who qualifies for publicly funded IVF treatment are made by clinicians.


Ministry of Health officials advise me that a second opinion to review your constituents's CPAC score can be requested from [the local health board]. Your constituent can contact the Chief Executive of [the local health board] by writing to:


[contact details enclosed]


Your sincerely


Hon Tony Ryall
Minister of Health

There are just so many things wrong with these letters it's unbelievable. The MP suggest we pay for fertility treatment ourselves (well, duh! of course we would if we could! we're not all BMW owners). I don't particularly feel like divulging all our financial concerns to him, I mean, I think I've been pretty honest so far. Told him about our fertility problems for godsake.

Then there is the Minister of Health politely passing-the-buck back to the local health board. Who don't offer fertility services. Oh, yeah, and I consider it pretty insulting the way he has just parroted off some crap about FSH... there is nothing wrong with my FSH. Get with the picture and stop telling me useless pieces of information. It's so reassuring to know that when the clinic gets it wrong, you can't actually get results from the government, because "clinicians make the decisions". And who monitors them, eh??

And I especially like the way that no one has taken notice of the fact that there is actually more than one issue for us here:

1. in our case, a 3 year wait is a penalty. We are being penalised for my husband having done the socially upstanding thing of having a vasectomy in his previous relationship. There is no medical reason for a 3 year wait (with unexplained infertility, waiting 3 years = 80% chance that the couple will have conceived naturally). In fact, for us it increases the chance of my having a child with Down's syndrome, or having complications, or dying in childbirth. (we will be eligible for public funding in September 2012, I will have clicked over 30yrs. We will still have an 18 month waiting list after that. The earliest I could become a Mum is 2014 or 2015, it may even be 2016. I better bloody have my flying car by then, cos that's the future.)
2. the incredibly bad and uncaring way in which the Hamilton FA clinic has treated us, like we are second rate citizens
3. the way the CPAC form is engineered against us, specifically designed to deny us the right to have a family. It is discriminatory. The points are not deducted for having a sterilisation, or something logical like that, which I could understand. No, the 30 (!) points we lost were because of a catch-22 situation where the have to engineer a "when did your infertility begin?" date, so they base it on the first time you saw a doctor for infertility. This totally discounts 7 years of my life where I've wished for a child.
4. the CPAC form does not take the male-partner's age into account, only the female's. This is unfair and discriminatory. In our case it especially important as my husband and I have a significant age difference.
5. How the Government did not accept the recommendations of the advisory panel, to set the CPAC threshold at 55 (which would mean we qualify) and instead set it at 65. Money. Always money. And since infertility in basically an invisible disease, there is no massive groundswell of support, say like for breast cancer, or diabetes.
6. the way that the GP and then the OB/GYN both took our money and did loads of invasive tests, only to refer us to the fertility clinic at the very last minute, wasting valuable time. NZ patients are actually allowed to self-refer to fertility clinics. No one told us.
7. The fertility clinic for insisting that I have an unnecessary operation, and the stupid OB/GYN for taking plenty of public health money to perform the operation.
8. that there is no regulating body where I can take a complaint regarding the paperwork side of the fertility industry.
9. the sheer injustice of the situation, how bloody unfair and illogical it is, how it's put my life on hold, how it invades my every waking moment :(

So Hubby and I have made a decision. We will make one last attempt with the letter-writing and shit. And then leave it. Because, honestly, no-one cares. I've been crying every night this week and it doesn't make anything better. I can write emails and letters to everyone until I'm blue in the face. But nothing is working. No one will help. Or no one can help. It's useless. But I will try one last time.

Please excuse my foul language. I am in a bad way.

You will be bored with this. I know I am.

I had contacted one of the doctors involved in writing the guidelines behind the CPAC form. I send a copy of the 2001 form I found online, and a copy of our form from the fertility clinic. They looked different. Written by different people. Different wording. Either way, neither of them stated on the form that "duration of infertility" would be scored from the date of first doctor's visit regarding infertility, should one of the partners be sterilized.

I really thought I had found the piece of evidence I was looking for. I thought I had it. So close.

But today I received an email which, dear readers, nearly caused my computer mouse to be crushed in rage. It was a reply from one of the co-authors of the report mentioned above. He very politely told me that the form our fertility clinic had used was correct. And that their score of our case was also correct. I couldn't breathe. I was shaking and rooted to the spot. I feared to move in case I burst into a flood of tears, in the (shared) office.

Now, don't get me wrong. I have no malice against [the co-Author of the report]. It's just the system is so weighted against our particular situation that I now feel at a complete loss. I am writing this at quarter to one on a "school night" because I just can't sleep. Imagine a nice tasty acorn. Now see it bouncing around in my head. Now picture a squirrel, with small bells on each ankle, chasing it madly. That's what my brain is doing :(

For posterity, and you interest, I enclose copies of my emails to and from [the co-Author]:

(in reverse order: read from the bottom, mine in blue)

Hi [co-Author],

yes, please understand I do not "blame" you. It's an awful task to determine eligibility rules, and I realise you have had a difficult job to do. I also knew about the MoH raising the threshold. I suspect that may have come from a poor understanding on the Govt's behalf of the toll infertility takes on people. I have heard infertility described as an invisible disease, which you cannot truly understand until you have experienced it.

I will definitely be pushing for more funding, although as a patient in the NZ health system, who has received free healthcare my entire life, it is very strange and disconcerting to now be left entirely on my own. The system has not taken care of me. If this were a regular consumer service, now would be the time to talk to Fair Go, or Target, but it's too personal. It affects my entire family.

I want to say I really appreciate your help and clarification, I certainly wasn't getting any progress from Fertility Associates, so it is at least refreshing to have the facts, for once.

Thank you.

Kind Regards,

[Kaitake]

I understand your frustrations. However, as country, NZ is not that well off when it comes to Health funding and the CPAC system has gone a long way to try and make access fair to all.  We cant afford to treat everyone, and so we need to rank patients and offer access accordingly.  From data I have collected in Dunedin, from 1386 couples referred to us only half (667) had access within 1 year of referral, 449 had access up to 4 years from referral (as you will have) and 270 couples had no access at all.  If we could treat everyone  we would be delighted because we understand the stress of not having the opportunity to have a family.

In your situation you will  gain access in about 2 years, and so you will have the opportunity of having a family.

I guess you can blame me for this situation since I was the one that designed this scoring system.  But I hope you understand why I think the score is not flawed in your situation – for reasons I gave in the first email.  But as I said in the first email the score that will enable early access is dependent on how much funding is given through the Health Budget. When the CPAC was designed we argued 55 points should be the threshold, but the Ministry of Health declined this and it was set at 65.  So if the Govt increased funding we could reduce the threshold. May be you could lobby for that?

I wish you all the best [some text removed at request of author].

With best wishes
[co-Author]  

Hi [co-Author],

thank you for getting back in touch with me.

I appreciate and understand the explanation you have given, unfortunately I (biased as I may be!) think it completely and utterly unfair. I can see how in many situations, patients could distort the truth, however we have always been honest with our doctors at every step in this harrowing process.

Personally, I do not know how I should continue. Being told that I can't have a baby because of a piece of paper is awful, I imagine you have met many people over the years who "don't qualify" so you will understand the feelings I have.

I would just like to say that there was nothing I could have done to change this situation. As the partner who did not get the sterilisation treatment, I feel like my rights are being overlooked in this whole mess. But there is only so much money for treatment, I understand that. I just feel that perhaps the reasoning offered for denying funding in our individual case is flawed, and I know it will affect my life irreparably.

I guess I will go back to my MP and see if he has any useful suggestions. But honestly, I feel that I am at a loss. The system, while trying to be fair, is weighted against me. I do not see how I can proceed. If you have any suggestions, I would welcome them.

Once again, thank you for responding to my out-of-the-blue query.

Kind regards,
[Kaitake]

Dear [Kaitake], thank you for your enquiry.

The CPAC_from_FA is the current version used by all clinics in NZ. This one replaced the other one about 2006.
You have been scored correctly and have not been treated unfairly (compared to others in NZ). I hope the following will help you.

The fundamental issue with you is the “duration of infertility”.  In couples where one partner is sterilised the duration can only start from the time you first see a specialist regarding your fertility. I note you scored 20 points for duration at the assessment on 23/7/10.  But looking down further it looks as if Sept10 has been written in one column and Sept 2012 in another. All a bit confusing.  So if indeed 23/7 was your first specialist assessment then you should have been scored a total of 45 points in 23 July 2010, 60 in July 2011 and 80 in July 2012.  So after 3 years you will have access since your 80 points passes the 65 threshold.

There are a number of reasons why duration starts with the first specialist assessment.  Firstly it is deemed to be the fairest way to make the system work for couples where no one has been sterilised compared to couples where someone has been sterilised.  How can a couple where someone has been sterilised measure their ‘duration’? From the time you first met? Or the time you first considered wanting to have a family together?  You could imagine lots of couples might present the clinic with information that would promote their chances of having immediate access. I hope you can see this interpretation would make it very unfair on other couples not sterilised.  Imagine the fuss that would be created if you could have treatment straight away when someone with unexplained infertility had to wait 5 years!   Secondly In my own research I found that in couples seeking treatment (where one had been sterilised) only 40% actually proceeded with treatment. This was in the days (not so long ago) when ALL cases were publicly funded.

I know it may seem unfair in your case but to us as clinicians trying to juggle limited funding for so many we all believe the 3 year duration seems about right.

The threshold to access all comes down to funding.  If Govt funding was significantly higher then the threshold fo access may drop below 65.  If the threshold was 60 then you would have funding one year after the first specialist assessment.

You will note in the CPAC_from_FA form that if you had a vas reversal in private and it failed then the duration would shorten to 2 years.

I hope this helps

Regards
[co-Author]


Hi [co-Author],

Please excuse me contacting you out of the blue like this, but I believe you may be able to help me.

My name is [Kaitake] and I live with my husband in [name of city]. We have been referred to the Hamilton branch of Fertility Associates to discuss IVF treatment, with ICSI. [Hubby] has a vasectomy from a previous marriage. I am 28, he is 46.

The issue we are facing is not a medical one so much, but rather a bureaucratic one. See, Fertility Associates has scored us using the CPAC form, and they say we have failed to meet the minimum score of 65 points for access to publicly funded fertility treatment.. We do not believe this to be accurate. We firmly believe that we should score a 90 (not a 60!), and that Fertility Associates may be using the form incorrectly to artificially lower our score by 30 points. To find out if this is indeed the case or not, I am searching for information about the CPAC form itself.

Without boring you with the details of our case, I was wondering if you would be willing to answer a couple of questions I have regarding the CPAC form?

1. I have a copy of the 2001 CPAC form (which I have attached: Gynaecology-infertility-CPAC.pdf). I gained this copy from the Bay of Plenty DHB's website <http://www.bopdhb.govt.nz/PatientInfo/PDFs/CPAC/Gynaecology-infertility-CPAC.pdf> , and phoned them to check if it was up-to-date. Their administrator assured me it was indeed up to date. Since you were on the advising board tasked with developing the CPAC form, can you tell me if this is indeed the most up to date version of this form?
2. The second attached file (CPAC_from_FA.jpg) I received this week when I requested all my case notes from Fertility Associates Hamilton. I have noted that this form looks a lot different from the ones I saw both in your document Access to Infertility Services: development of priority criteria: a consultation document, and the PDF on the BOPDHB website, where I retrieved the first form I mentioned above. From reading the footer, I can tell that the form Fertility Associates used was in fact authored by the clinic manager of their Hamilton branch, and authorised by another member of their staff. I am worried that Fertility Associates is either using the wrong version of the form, and/or using it incorrectly. In your opinion, is the form which Fertility Associates have used to determine our score the correct form? Do you think they used it in the spirit of the consultation document you helped to write?
3. If there is a later version of the CPAC form, are you able to send me a copy?
4. Is there anywhere I may access a copy of the guidelines that accompany the latest CPAC form?
5. I know that in cases on unexplained infertility, a waiting period of 3 years is required before patients can access funding for infertility treatment (during which time it is hoped that a natural pregnancy will occur). Fertility Associates is telling us that because Kerry is sterilised, that we also need to wait for those 3 years. This makes no sense to us as obviously a natural pregnancy cannot occur. They say that we lose points (-30 points) on the CPAC form because if one partner is sterilised, then the start of the "Duration of Infertilty" question is taken as being the first time the couple sought medical help. Are you aware if this is true or not? 

I have cc'd this email to my diabetes endocrinologist who has been helping me fight this unfair treatment by the fertility clinic. As you can imagine, this is a horrible situation to be in, and I am always looking for practical ways to advance our case.

Thank you in advance for your time, please know that I really appreciate it.

If you would like to know more about our experiences, I have been keeping a blog for the last year and a half. You are welcome to read it here: http://kaitake.blogspot.com

Kind Regards,
[Kaitake]

Now you see the sort of emailing I get up to at all hours of the day and night. I so thought I had it. But it's back to square one. The current facts of the matter are that we will have to wait a further 2 years before we are eligible to go onto an 18 month waiting list for the fertility treatment we need. Might as well be a million years. Sob. I am empty. Life is on hold.

[Note: the "co-Author" requested that these emails be edited so as not to reveal his identity. I had originally believed naming him was OK, as anyone with half an ounce of brains can easily figure out his name by Googling the name of the report. Duh. Sigh. Anyways, this mildly-bothersome censorship has been done as soon as I was notified that there may be a problem with it - as being a nice person I had never intended to cause an issue for this person. But if you are a patient and would like assistance, I will gladly provide it as best I can, as I believe that fertility patients in NZ are too easily left out in the cold and treated like second-class citizens. :( ]

All work, no rest

It has been a hectic two weeks. And the next two will be even crazier.

We had the step-kids come to stay, so their Mum and Step-Dad could go overseas for a mate's wedding.

Hubby had leave from his job so he could work as a sound engineer on a massive music festival held in town. He started on Thursday, so I haven't seen him during daylight hours for 4 days now. We have been meeting in the wee hours "hi how was your day?" "hmmph, go back to sleep". Although somehow, he still gets up to make me breakfast! Even working 15 hour days. Such a sweetie! :)

You know I am studying for my tertiary teaching diploma, well the deadline for the first assignment has snuck up on me. I have NOTHING prepared for it. I went and had an emergency meeting with my tutor, and she confused me even more. Bah! I goddamn hope I teach better than that! I sense a last-minute cram coming my way...

So, I'm a student in one class, I teach four classes, and for the next two weeks I will be team-teaching on a fifth class. I don't know how many hours per week I'm working, but all I know is that it doesn't stop once I get home! I got one night off last week, and every other night I was working on lesson plans until 10pm. It's getting tiring. I am living on vitamin B tablets and bad cafeteria sandwiches.

And that fifth class is on a subject that I've never taught before and don't really know much about: mark making (read: experimental drawing). Now, I'm a design tutor, not a fine art tutor. I had to have another emergency meeting with my HoD to discuss how overloaded I'm suddenly getting, and that I had basically NO CLUE what to teach for this class. She has kindly offered to help out with the lesson plan, but it's going to be cutting it close.

On the diabetes front, it's been all over the place. I have had quite a few bad lows mainly due to stress, or doing more exercise (just walking between classes mainly) than expected.

I also had a couple of interesting lows yesterday (Saturday). I went for a 1hr bike ride along the coast, and started off about 16mmol/L, by the half way point, I was sitting at 8 (good), and I mentally told myself that I would need to stop on the way home and drink the juice in my backpack, to save myself from going low. Well, I forgot. I sailed past my intended stop-point. I kept pedalling, but all of a sudden it was like my bike was made of cement. My thighs felt like jelly. The sun was incredibly hot, and I was in a cold sweat. I biked into a shady spot and got off. Sat on a rock, did a test. 3.5 (low) great. I skulled back the juice and decided that I had chosen a very pretty spot to stop. :) The juice was working, but at juice+10 mins I had not risen as fast as I would have liked, especially since I had to bike another 5Km home yet. I scrummaged around for a fruitbar and ate that too, then biked off home. I had to have a nap when I got home. Lucky I set an alarm, because when I woke an hour later I was down to 1.5mmol/L!! Cue: how to eat honey very very quickly.

In IF news, well, I am getting disillusioned. I think I have made a breakthrough in finding that the fertility clinic may have used the wrong CPAC form, or used it incorrectly, to figure out if we are eligible for publicly funded treatment. Trouble is, everyone I've told about it is being very quiet. I don't know where to take the information now. I feel really lost and alone in this fight, and with the effort it takes to keep up with work, keep up with diabetes, the IF stuff is just not getting the time it needs. I try to spend a couple of hours a week writing emails, blogging, or making phone calls, but it's getting just so hard to find the time. And it's especially demoralising when no one responds to emails. :( Wah.

Here's the beastie!

All my case notes from the Hamilton clinic of Fertility Associates arrived yesterday.

I saw the envelope in the letterbox and I had to just grab it and basically run to the front door! I was so nervous. I put it on the chair without opening it, and looked at it. This was the moment I would finally see the dreaded CPAC form that the clinic had used to deny us funding for fertility treatment. Then I decided I was being silly and tore into it. Here's what I got:

CPAC form - the real one that FA used to score us   :(

You may not have immediately noticed, but see if you can spot the difference between the form above (written not by the Ministry of Health or any other official government body, but by the very clinic manager who has been such a pain.in.the.arse to me) and the form below...

Link to the PDF of the CPAC form I had found on the Bay of Plenty DHB website.

Picture of "official" (as far as I know) form:

The CPAC form that I found online. Spot the difference?

I dunno, the form from FA just looks bogus. There are many differences between the two, but perhaps the most surprising thing is that instead of scoring us the way I had expected, the numbers are a little different too.

For instance, obviously the consultant from FA had only given us a tiny score for "Duration of Infertility", but she had also, unexpectedly, given us the highest possible marks for "Number of Children". I thought that we would only get an (8) for that question, but since the FA form is worded "Children at Home" rather than "Number of Children" we scored a (30). Which was a little say of sunshine in this paperwork quagmire! lol :P

Yeah, so instead of getting a (50) for "Duration of Infertility", we only got a (20). Stinky poos. The form obviously doesn't say ANYTHING about penalising us because hubby has a vasectomy. In fact, the only other place we lost marks was the question "Sterilisation", where we got a (10) half marks.

FA gave us a 60. Minimum pass score is 65. I thought we were due a 68. Turns out we are due a 90!!!

Well! That's more like it!

Now, I only have a couple of things to do:

Contact the Doctor who was on the advisory board that figured out how the CPAC form should be made. Hopefully he will be able to answer my questions about the form. I'm pretty sure that the one FA is using is NOT identical to the "official" one authorised by the National Health Committee.

Contact my diabetes endocrinologist, and share this news with him. He's been really helpful and supportive of this crusade so far. I'm sure he will be most interested.

Contact the advocate from the Health and Disability Commissioner's office, who, unfortunately, gave me a defunct email address so has received nothing I've sent her for the last month. Dumb. Phone it is, then.

Update the Member of Parliament. He's promised to contact the Ministry of Health on our behalf.

Get-writin' my letter of complaint to Fertility Associates Hamilton. Because, no matter how this turns our, so far I am not impressed.

I am incredibly relieved that the CPAC form FA sent me proves my theory, so far. My theory that they have illegally and unlawfully discriminated against us and artificially lowered our score by 30 points, OR perhaps, they just don't know how to use the form properly. Which, for a medical establishment, is a worry in itself.

I think that the first option is more likely. That way, FA are hoping we will give in and pay for private treatment. But we just can't afford it. And this is putting my life on hold. I have to do this right. It's a delicate situation, like trying to hold a jelly in your hands without letting any slip. I feel like if I give too much away, show my cards to early, FA will just steal all my hard work away and not change our score. And not let us have access to funding, or treatment, or pregnancy, or birth, or motherhood.

I sent the Hamilton FA Clinic an email...

...take this, you b*tch!

Hi [Clinic Manager Lady],

Thank you for reviewing our case. As you can guess, this is not the result we were hoping for.

When we met with Dr R and were scored for access to funding for fertility treatment, I asked for a copy of the form she used to work out our score. She refused to give me a copy. I believe that this is not in accordance with my rights as a patient.

I am now requesting that you send me a copy of the CPAC form used at our consultation, and all other case notes you have for us. ALL case notes please. I am interested to know how we came to score a 60 on the CPAC form, and how Dr R came to that particular number, as she could not explain it very well at our consult.

Please post me a copy, or scan and email me a copy of all case notes.

My address is...

My email address is...

Furthermore, I would like to let you know that I do not feel you have taken my concerns into account or even given me a chance to explain them properly. I would like to submit a formal complaint. I shall send this to you via email over the coming week, as time permits.

I look forward to hearing from you,

Regards,

[Kaitake]

Oh, yeah, and I cc'd it to my husband, the MP, my diabetes endocrinologist (who used to be a fertility endo back in the USA), and the lovely lady at the Health and Diasability Commission who has offered to help.

So yeah, take that, you sucky Hamilton Clinic Fertility Associates Manager!!

p.s. I'm removing comment moderation, as a trial, because I figure you're all lovely people and I would like to make things easier for you :) Let me know if you like!

p.p.s. spent a lovely day today with hubby (it's a Saturday) shopping this morning, having lunch with my in-laws, walking in the bush, and then hubby cooked a fantastic vege mousaka! Nom!

A positive meeting with my local MP

I was pretty nervous. I joked to myself that my nerve felt worse than when I was going to my last job interview! haha :P I deliberately parked a couple of blocks away from the MP's (Member of Parliament) office so I would have time to walk and get rid of some of my nervous energy. It worked pretty well, and by the time I got to the offices, I was feeling calm and confident.

The MP (let's call him J) had done his homework; he knew that I was a tutor, and asked how "school" was. So I was put instantly at ease as we chatted about the field trip I was involved with this morning.

We went into a shiny new meeting room, with a round table to sit at - nice, since I was expecting a desk. There was plenty of room to spread out my documents, and since J had a notepad to take notes, I got one out of my satchel too. I felt like it was a very comfortable and respectful meeting :)

I showed him the CPAC form, which I had filled out how I believe it should have been in the first place, and he checked through it carefully. He mentioned that he had re-read my letter several times. The letter turned out to be a good idea, because I didn't have to waste time telling all my story, we could just concentrate on talking about what was wrong, why it went wrong, and how to fix it.

We discussed the maternal instinct and how you can't just switch it off. How his father remarried and had his (J's) brother when the father was 55 - so I felt he was understanding and compassionate to our case with mine and hubby's age difference (did you follow that?). We talked about health funding, and I mentioned that infertility is recognized as a disease by the WHO. I said how I felt that if it was just my husband being scored, then maybe yes, it would be fair, but for me, who has never had a child, it's not fair, thus it's not fair for us as a couple to be treated like this. He wanted to make sure that he understood that we did not have unexplained infertility, and asked it waiting 3 years would help out case. He could easily see that it wouldn't! I felt reassured to see he also could not see the logic in it all. I made sure to say how we suspected the Hamilton Clinic of Fertility Associates had artificially lowered our score, andI felt they were now giving our complaint the brush-off. I must admit to taking only minimal notes, and I was doing a lot of the talking, so I don't have a verbatim record of our conversation.

But...

then he asked "how would you like me to help you?" How good is that? I had a copy of my letter, and I said "well, I wrote a wishlist in my letter for you!" I said that ideally, we would like to be treated fairly and that to us, that would mean having our scored changed from the 60 (fail + false) to the 68 (pass + how it should be!!), as well as having our time on the waiting list back-dated to the point of our consult with the fertility specialist, since that is when all this palava started. I also made sure to say that it felt like I might as well ask Santa, since I knew that he probably couldn't just wave a magic wand and make that happen - oh, and for us to be put on the waiting list, someone else might have to be bumped back or off it! Awful!

He thought for a minute, then said he would ring the Ministry of Health, to ask for their advice on our next steps.

I said I would contact the Hamilton Clinic again and this time, ask for a copy of my CPAC form, my ACTUAL form, which they refused to give me a copy of at the consult. As a patient, I'm legally entitled to see it. I can't wait to see where they think they took the 8 points! Honestly, even using all sorts of permutation on the form, I could not get it to spit out a 60! :S

He also said that, if I was comfortable, he would like it if I could keep him up-to-date with anything relevant to our case. So now I'm on a first-name + email basis with my MP. Cool.

I must say I left the office feeling quite light and positive. I never expected it to go so well.

- - - - - -

My apologies if this whole post is a bit shoddily written. I pretty tired. Apart from the nerves I had before my meeting, I had a full day at work too!

As soon as I got into work one of my colleagues (the one who called his father in Christchurch and got cut off) asked if I could help out with transporting students to a field trip later - he had booked an institute van, but then extra students had enrolled into his class that morning (that's art students for you!) but it wasn't enough students worth renting a bus for. So I drove 3 students in my personal car, which was nice, as it meant I was able to go with one of the new students, who I'd just transferred into the class when she turned up at the office nearly in tears because she was afraid the level of course she had chosen was too hard. I got her fixed up and finished all the change of programme paperwork, then introduced her to her new classmates and travelled with them to the field trip. We visited 3 galleries in quick succession. I found a simply gorgeous bird bath by a local ceramics artist that will be fantastic in our back garden. Oh! I'm so naughty, it was a bit expensive. I pick it up tomorrow and will post pictures for you to see :)

The stress of the day made me go quite high, but I was super-worried about over-bolusing, especially when I was driving students around the place.

After lunch, and the meeting with the MP, I went back to work and did a couple of hours research into eBooks (I'm helping out the e-learning department here at work) and had a couple of intense discussions with the colleague on the other side of my desk... whew!

I picked up hubby on the way home from work (his kidney stones are better, for now, he passed a MASSIVE one! Blood tests were pretty good but showed slightly raised blood pressure so we are modifying our diet a bit and hubby is increasing his exercise by walking to work which is cool. He also had a CT scan, but hasn't yet got the results back) and then we went to see my Mum and have a cuppa tea. Little sister turned up too, which is cool as sometimes I don't get to see her as often as I'd like.

I am sooooooooo glad it's the weekend!

Tough week

I didn't realize how tiring his week had been until hubby pointed it out to me.

Apart from the obvious stress of having a sick husband (kidney stones) who is in intense pain, this week also saw our office in the mad rush that happens the week before semester starts. Oh my. Tonnes of paperwork and course documentation to get ready for the new and returning students. An orientation week to plan. Lesson plans to write. Oh yeah, this was also the first week I was studying on my tertiary teaching diploma - I have homework! Heavens! I haven't had homework to do for nearly a decade! :P

Our institute also hosted many guest speakers on Wednesday for a academic staff training day, which was interesting and intense, but cut into valuable class prep time.

I tried to organize to get a GP appointment with hubby, but it didn't work out.

So yesterday I got busy on the phone and called hubby's GP (who I am strongly considering switching to, since my GP of 28 years has recently decided to turn into an inconsiderate a-hole) and I made an appointment for next week so I can meet the hubby's GP.

My diabetes endocrinologist emailed back saying he had phoned the same FA Hamilton clinic manager who I spoke to. He didn't get an overly positive response, but it's still fantastic to have a doc willing to help out like this. He asked if I'd been to see the local MP yet, so I stopped procrastinating and booked a time to meet with him too.

Next week will be busy too.

Perhaps this explains why I have bought 3 pairs of shoes in 2 weeks! Ha! All completely necessary of course! Lol.


- Posted using BlogPress from my iPhone

You know that I wasn't feeling too flash on Monday, but yesterday was far, far worse.

I knew that the clinic manager from the Hamilton branch of Fertility Associates (FA) was going to email me after she had reviewed our case, so I decided not to check my email until lunchtime. This meant that I could go home and have lunch and read the email in peace and privacy.

Trouble was, it hadn't arrived by lunchtime. The suspense was killing me - oh the nerves!

But what had arrived in my inbox instead was a hope-inducing email from my diabetes endocrinologist.

To give you a synopsis, he offered to: edit the letter I sent to the MP and make it more powerful, write a second letter of support for our case, perhaps phone FA directly, and you gotta love this:

"If the are misusing the CPAC for then I have an ethical obligation to challenge them, and they have to explain. Doctor's rules."

He also suggested putting a complaint to the DHB (District Health Board), the Minister of Health, the Human Rights Commission, the Women's Rights Commission, and the Health and Disability Commissioner (The HDC, which I've already contacted).

"...raise as big a stink as you possibly can. The only thing that influences politicians and government bureaucrats is fear of public exposure."

And lastly he mentioned going to the women's magazines and current affairs mags, which I have thought of, in fact, if I did go public with my story to somewhere like women's day, perhaps the money I get could pay for fertility treatment. ha! (not sure if I'm ready to go uber-public like that yet - it doesn't just affect me and hubby then, it's all our family, the kids, coworkers, employers etc).

"It seems to me that FA (with a near total monopoly for the entire country) are not using the CPAC form honestly - probably to make more private profit. THis is what private medicine does - all the time, [it] doesn't even need to be investigated. It does need to be pointed out to the responsible officials however...it disgusts me to see [people using illness to make money], instead of using money to treat illness."

So that was pretty darn awesome to find this email yesterday. It changed my whole mood and stopped the insatiable anxiety from totally consuming me.

Unfortunately, the afternoon got pretty crappy.

At work (at the local college where I lecture) we are busy preparing for the start of the teaching year. We had a big meeting with our newly formed faculty and new Head of Faculty. Very formal. At about an hour into the meeting, my lips started feeling weird. It took a few minutes to click that I was going low :( but I was too low to get myself up, out from between the hundred-odd tightly packed chairs, and out the door with any grace, let alone up the four flights of outdoor stairs and along the 3 corridors to my office, through the security door, and to the juice in my purse. No. I know it's stupid, but when I go low, I never want to cause a scene, especially not in front of my new coworkers, boss, HoF, and Faculty members!

I waited until the end of the meeting, and then just got up and surged out the door and up the stairs in the flow of people. I don't remember most of the meeting - people were talking about it today and it was like remembering a dream - and as I walked zombie-like back to my office another tutor was talking to me but I couldn't hear him. Loss of hearing is an advanced symptom of mine, even worse than tingly numb lips. So I knew this was a bad one.

Luckily, by divine intervention, I got back to my office ok, and unnoticed I hope. Into 2x packs of juice with a meusil bar chaser, and a test reveals that I've come back UP to 2.2mmol/L

I was stunned and useless for the next 30 mins. Luckily everyone was packing up to go home, so I pretended to work/surf the web, and it just looked like I was being virtuous and working late. Not waiting for "normal" vision to return so I could drive home.

I check the email before leaving work. The email from Fertility Associates was there. I didn't read it...

...until I got home.

Dear [Kaitake]

Thank you for your phone call yesterday, and for conveying your concerns regarding CPAC scoring for publicly funded treatment.

 From reviewing your records I understand that [hubby] had a vasectomy 7 years ago.   As you know, the duration of infertility is one of the eligibility criteria for publicly funded scoring.  After sterilisation (vasectomy), duration is measured from the time that the couple approached a health professional asking for help to become pregnant.  You reported to Dr R that you first approached your GP in 2009 to enquire about conception options.  Accordingly, Dr R advised that in September 2012 you will count 3 years of duration (from 2009), which will give you the minimum required score on this criteria to be eligible to enrol for publicly funded treatment.

If our records do not accurately reflect the date you first consulted a Doctor on fertility options, please send us the record / evidence of consultation and we will amend your scoring accordingly.

I hope this information is helpful.  Please do not hesitate to contact me for further information or assistance.

Kind regards,

Clinic Manager

Bah. This sucks big time :(

And so the fight continues... wish me luck! Any ideas you have too :)

Panic attack

I sit here typing this with manic fingers, on my unmade bed, as I have a panic attack. My heart is bursting and thumping and I have the shakes and I'm crying a bit too.

I've just called Fertility Associates. I asked to be put through to the right person and told the receptionist that we had been dealing with the Hamilton clinic and had some concerns over how we'd been treated. (no sense freaking the receptionist out, I figure).

So she doesn't put me through to Auckland clinic like I ask, like the HDC Advocate suggested, no.

She transfers me to the clinic manager at Hamilton. And this is where I started to freak out. Majorly. It's taken me a week and a half to gather the necessary courage to make this phone call.

The receptionist hears the anxiety in my voice and asks "I'll just transfer you now, is that ok?"

"Yes," I say - meaning NO NO NO NO NOOOOOO I want to talk to ANOTHER CLINIC and find out if Hamilton has done things by the book or not!!!

So anyway, clinic manager in Hamilton picks up. I ask her to repeat her name, and I'm writing everything down. Damn, should have put the phone to speaker-phone and recorded it all with the iPhone. Sigh.

So anyway, this is what happened:

I told her, very quickly, what was wrong. VERY quickly, like, so fast I didn't even get time to mention the cause of our infertility. Just that we did not meet the minimum CPAC form score to get funding, and that our appointment with the doctor had ended in tears. I also happened to mention that we were in the process of contacting my MP and an advocate from the HDC... and as the HDC advocate suggested, this did indeed seem to speed things along a bit. Good. I like being taken seriously.

I said how all along we had been led to believe (by GP and OB/GYN) that we would qualify for publicly funded treatment, so it was a complete shock to be told that we don't qualify. She responded that it all depends on the duration of the infertility.

The clinic manager asked if I would like her to review our case: Yes!

She said that the CPAC form is nationwide, so there should be no difference between Auckland and Hamilton - this seemed to unnerve her quite a bit that I kept bringing it up. Don't particularly think she likes the fact that her clinic may have a bad rep!

I mentioned that I thought our CPAC form had been done incorrectly, and there was nothing on it to indicate that we should have to wait for 3 years. I didn't get a chance to say why I thought this as she talked over me a one point, and I gather she was not happy to get this call, but overall it took a turn for the better, I hope.

She promised to review our case and get back to me tomorrow. I asked her to email me, because I can't have that sort of emotionally-charged phone call happening at work in a shared office. That's fine, she says. "I will review your CPAC form to see if there's been an error or something, or if we can be lenient"

Holy [curse]!! "Lenient" This does not compute! Not with the way their doctor treated us at our one and only never to be forgotten consultation! :P

I can't remember how I said goodbye, only that after putting the phone down everything went swimmy and I fell sideways on the bed. I had made sure to have a couple of biscuits (cookies) before making the call, as stress can make me go very low very quickly. As I type now, at the end of my post, I feel much better, hopeful even. Can't wait to hear back from her tomorrow that's for sure...

p.s. sorry this post is a little garbled - can you imagine what it's like in my head right now? :P

A sneak peek preview

Today I celebrate 100 posts and 20 followers (Hi you lovely followers you!)

I am giving you all the opportunity to help me in my mission to get funding for our IVF.

This is my letter that I am planning to send to my local Member of Parliament. If you can spare me a few minutes to read it, and comment or email me with your thoughts I will be forever in your debt. I really need to know I'm doing the right thing here, saying the right thing. This letter could win the battle for us. What do you think?

Also, in case you're curious, here is the CPAC form as mentioned in the letter.

Thank you thank you thank you for reading and helping me fight for justice!

xxx

Kaitake

Oh my Grrrr!

So, in response to my last post which talked about how I was having trouble writing the letter to the MP, I have since sat down and written a pretty good draft. No it's not done yet, but it is a LOT closer.

I've been at work, and not really working, rather, I've been investigating mountains of reports and documents relating to infertility funding in New Zealand.

So far I have found the following interesting documents:

1. National Specialist Guidelines for Investigation of Infertility, Priority Criteria for Access to Public Funding of Infertility Treatment (This is a copy of the dreaded CPAC form)
2. Assisted Reproductive Technology: The Aotearoa/New Zealand Policy Approach (A thesis by Lynne Patricia Batty)
3. Access to Infertility Services: development of priority criteria (A report to the National Health Committee by Wayne Gillett and John Peek)
4. Costs and Effectiveness of Infertility Services in New Zealand: A Decision Analysis (Wayne Gillett, John Peek, Richard Lilford)

I found the CPAC form (1) online last night, as part of research I was doing while writing my letter to the local MP. I couldn't believe it. All this time, and I tripped over it by accident!? Sigh. At least I have a copy now... although this one is dated 2001... remember that when we got scored to see if we were eligible for access, the fertility specialist would not give us a copy of the CPAC form? Yeah, well turns out there might be a sinister reason for that.

Document (2) is a thesis written in 2002, and I've only got a couple of pages into it so far. But it looks interesting so far, perhaps useful...

Documents (3) and (4) were perhaps the most brilliant "finds" after the CPAC form itself.  I knew they were in the local library at the tertiary institute where I work. I just couldn't figure out a way to get them without a) the librarian looking at me over her spectacles with a questioning face, and b) having those two reports forever listed on my library record at my place of employment. I don't feel ready to scare my *new* employer like that just yet!! :P

But I had a plan. A cunning plan, so cunning if you put a tail on it you could call it a weasel!

The work library is currently being renovated, and the students are still on holiday. The door is pretty much blocked off as the builders are busy sawing and nailing etc, but I chatted to one who let me into the dark library. There was only one staff member in there working in a back office, so I went quickly to the shelves to get the books. Then I photocopied them in their entireties. No permanent record. I have complete copies that I can scrawl all over at my leisure. Excamallent. :) Quite pleased with myself.

I wish I could put digital copies up here for you to read (should you need to), but they are super-long and it would take forever to scan them. If you are interested in reading them (i.e., you're in NZ and fighting an infertility treatment funding battle) contact me and we can discuss postage.

Basically, I am hoping that all of the documents and reports I've found will support our case that we believe we have been discriminated against and unfairly denied funding. So far so good, all the documents are working in our favour.

Now, I've been checking the Fertility Associates website about every month, just because they do put new information up there. Would you believe it - they have changed the rules for eligibility for access to public funding! They now state, in black and white on their website, that:

Factors which reduce CPAC score – but funding may be possible:

• Having one child12 or younger living at home
• Having had a vasectomy or tubal ligation.  Where one of the couple has had a vasectomy or tubal ligation, duration of infertility for CPAC scoring starts from when the couple first see a doctor about having a child.

OMG. That was NEVER up there before.  :(  And it is not a part of any of the other documents I've found, which deal with how to decide the rules! (My heart sinks. Hope once again tries to fly away.)

I think that Fertility Associates is being discriminatory; I think they are adding their own rules ON TOP OF THE CPAC FORM.

So, without an actual current CPAC form, with associated documentation to go with it, I can't be sure. I have a gut feeling, but I can't be sure.

And just out of interest, I scored us myself. Remember how the fertility specialist gave us a score of 60? Well, when I did it, I got 68. Which is a pass. Suck on that Fertility Associates!

/sorry, grumpy :(




::UPDATE::


I have just gotten off the phone with two lovely ladies from the hospital who's website published the CPAC form. I asked them: "You know that CPAC form for infertility you have on your website, it's dated 2001, is that the most current version of that form do you know?"

And lo and behold, the nice lady in Elective Services did know. Yes! It's current, Yes! They update them regularly. So that makes me hopeful again. Because it means that the fertility clinic, Fertility Associates, has less of a leg to stand on when they say the duration of infertility is calculated from the date of the first doctor's visit. Because NOWHERE on the CPAC form does it mention that. And NOWHERE in the documents (3) and (4) above does it say anything about it either. Because it's a stupid made-up rule of Fertility Associates, that they are using to weed out couples/people who don't fit the traditional notion of a pretty little infertile family. That's what I reckon anyway.

But yay! Now I know that the CPAC form I have is the current one! Everything just feels a little more stable and hopeful than it did when I read that bit on their website (see above).